Newport News family hopes their efforts and advocacy will help others

His eyes misted up momentarily as he surreptitiously scanned the medical building for a clue to the name. He then shook his head in frustration and looked away, unable to dredge up the words he sought.

For much of the time he can cover for his deficits, but there are moments when he's at a mind-numbing loss.

Three years ago, he received the diagnosis of Early Onset Alzheimer's. It's the same disease that took the lives of his mother at 61 and his older brother at 52 — but still it came as a devastating shock. The family had never discussed it or their genetic predisposition.

Just a year ago, Jim was more outgoing and social, more confident and engaged, concerned about the future but not weighted down by it. To the casual observer, the changes have been subtle — a more muted demeanor, a sense of uncertainty, a meandering detachment. But to Jim's wife, Karen, 43, they're "huge," magnified as harbingers of progressive decline.

At his neurologist appointments every six months, he submits cheerfully to psychological and memory tests. He now remembers about one of the five words the doctor gives him at the beginning of a 45-minute appointment. "I used to get 90 percent. Now, I might remember one," he said good-naturedly.

Karen sees the deterioration of his short-term memory. "I find a lot of stuff around the house that he's started and forgotten. He has a little more trouble finding the appropriate things to say at appropriate times," she said. "He forgets conversations we've just had."

They both know that the best has been and worse is to come. "It's a place where nobody wants to be," said Jim with disarming directness.

A year ago, the Newport News family went public with Jim's diagnosis to raise awareness of the degenerative brain disease. They became involved with the local Alzheimer's Association and spoke at local events to raise money for research. They talked of finding a cure, or at least slowing the progression.

Both have ratcheted up their efforts in the last year, Jim by participating in clinical trials and trying alternative treatments, Karen by extending her advocacy, lobbying in Washington and writing a blog.

Both are driven by concern for their children, Frankie, 12, and Bradley, 9, who have a 50-50 chance of acquiring the inherited dementia.

Jim's life

In the familiar surroundings of his home, Jim appears at ease. He spends more time with the children than he did in the past, playing outside with Bradley, helping him with his cucumber crop, refereeing board games and passing on baseball tips.

He no longer helps coach his son's baseball team — they didn't ask. But the two spent hours practicing so Jim could make the first pitch in a guest appearance at a Peninsula Pilots game on Alzheimer's awareness night on Aug. 1.

His natural charm and dry wit continue to carry him through brief social encounters, but his family notices the inexorable changes in his short-term memory and abilities. They particularly stand out in the "fix-it" realm, where the retired Air Force radar tech was once a whiz. He tenses as Karen recounts how he wasted $100 in paint because he forgot to use the primer first. Occasionally he's obviously disoriented — one day as he left a doctor's office in Norfolk, he asked for directions to I-95 for the drive home to Newport News.

He relies heavily on Karen and the lists she makes for him each day. "I get up in the morning and ask Karen what to do," he said. Items might include grocery shopping and household chores, and any appointments he or the children might have. "Usually he can get two, maybe three things accomplished," said Karen. "It takes him much, much longer to finish something — if it gets finished."

He stays physically fit, running a four-mile course several times a week, up Warwick Boulevard, over to the James River, then a zig-zag back through the neighborhood. He does some yard work, mowing the grass with a push mower, and fixes sandwiches for the children's lunches — though sometimes he forgets. He checks his list several times a day. "I walk past it dozens of times a day," he said.

He drives the children to friends' homes and to their baseball and softball games.

He keeps notes in his car, but sometimes gets lost. Then he'll stop and call Karen. "That's what Karen's for," he said, hugging her. He recently took a three-hour driving test at Riverside Rehab in Hampton. It assessed his abilities, including decision-making. He was given the go-ahead to continue driving, with the restriction that he should only drive in places with which he's familiar. The tests were mechanical, "easy for me," Jim said.

In addition to a loss of mental acuity, there are physical changes, too. Despite a good appetite, he's been losing weight, more than 20 pounds since last year. His face looks gaunt. He sleeps more, too.